This is the 12th in an ongoing series of posts bringing a critical sociological and feminist lens to my own experiences with endometrial cancer.

May 3 – the day the lilacs always bloom (at least according to my late parents) used to be my birthday. Now it is the anniversary of my diagnosis of endometrial cancer. Despite the best efforts of my family to make the day into a celebration, I could not hold these two life-changing events in my mind simultaneously. Grief won out and I spent most of May 3, 2026 reprising the anger and tears I’d felt at this time last year. While the rest of the family frisked in the crisp, sunny New England spring, I shivered from the cold (cancer treatments often wreck the body’s ability to bear cold or heat) and longed to get home and call a member of my endometrial cancer support group. At that moment, I realized that I had become a full-fledged resident of Cancer Land. The Land of the Healthy had become, for me, foreign territory.

A year of cancer treatment has not made me wiser, stronger, braver, or more in touch with what “really matters.” I have, however, learned quite a bit about the rules and culture of Cancer Land. In honor of my one year anniversary, I’d like to share some of what I’ve learned.

Cancer as a Chronic Condition

While many of us used to think of cancer as something that either is cured or fatal, cancer has increasingly become a chronic condition. We may find ourselves in the chronic cancer category if we have been treated for cancers that cannot be cured but can be medically managed over long periods of time. For some cancers, e.g. some hormone-sensitive cancers like certain breast and prostate cancers, this might involve monthly pills or other ongoing interventions. For cancers that have high rates of recurrence (for example, some bladder and endometrial cancers, and triple-negative [hormone receptor–negative] breast cancer) the protocol is surveillance, regular testing, and repeated treatments with (usually) increasingly toxic and lower efficacy chemicals. In addition, many of us live with chronic conditions in the aftermath of cancer treatments. These may include long-term or permanent immune system impairment, bone density loss, fatigue, brain fog, urinary incontinence, cardiovascular deficits, GI problems, and – of course – anxiety in its many manifestations (“scanxiety”, agoraphobia, OCD-type behaviors, constant attention to bodily sensations, etc.)

Here’s the kicker. According to the National Cancer Institute, approximately 38.9% of Americans will be diagnosed with cancer at some point during their lifetimes. That means that somewhere around one third of Americans experience or will experience at least some of what I described in the previous paragraph.

There is no easy roadmap for navigating movements from the margins of the Land of the Healthy to the margins of Cancer Land and back again, and again. For many of us, the biggest challenges are financial: We may not be strong or consistently healthy enough to go back to our pre-cancer jobs, but we may have depleted or lost our eligibility for disability payments. Some of us want to work but can’t handle full-time jobs or need jobs with flexibility, a hard thing to come by in today’s economy. I’ve seen chronic cancer folks working in physically demanding low-wage jobs because that’s all they can get in the wake of extended periods out of the workforce. And I’ve seen chronic cancer folks sitting at home, spending down what they had saved for their retirement, with no good plan for what comes next.

For me, the work-related challenges have more to do with my identity and sense of self. In the wake of a change of leadership, I was encouraged to enter a phased retirement program at the university at which I’ve taught for more than two decades. I’d always assumed that at some point I’d “graduate” full-time academic work (I’ve been in schools as a learner or a teacher for 68 of my 71 years on earth) and pick up some adjunct teaching. At this point, however, cancer treatments have affected my physical and emotional stamina. I doubt I have the energy to send out applications, face rejections, or learn the multiple pedagogical software platforms and workplace hierarchies at new schools. But I still have knowledge worth sharing and a commitment to education; and I am terrified of becoming irrelevant.

How Do I Describe Myself in a World Built on Binaries

Which brings me to the next lesson I’ve learned over the past year. We don’t have a good vocabulary for talking about cancer. Fortunately, we no longer whisper the word, afraid that other people or evil spirits will hear it. Nor do we use euphemisms like “the big C” or “the disease.” However, we seem to be stuck choosing between two opposites: “cancer patient” or “cancer survivor.” Where do the millions of chronic cancer folks fit into this dichotomy? At this time I am being treated with immunotherapy but finished – at least for now – with chemotherapy. That means my hair has grown back (I look “normal”), I feel energetic enough to play with my new dog, and most days the brain fog lifts for at least several hours. However, I need at least ten hours of sleep and naps each day, and I know that immunotherapy may wreck my endocrine, gastrointestinal, or other bodily system. Moreover, at some point, whether in a month or four months or seven months or if I’m lucky 18 months, a scan will put me back on medication with more visible side-effects. Am a still a cancer patient? Certainly not at the same level as six months ago when I was in the midst of chemotherapy. Am I a survivor? I don’t think so, though I survived a total hysterectomy and six rounds of chemo. As my oncologist told me with a somewhat bizarre optimism in her tone, “Ten percent of women with your kind of cancer don’t have recurrences!” (Yes, I can do the math.) Family and friends and even acquaintances like the local letter-carrier and hairdresser want to see me as a survivor. And as someone who is chronically impatient with delays, unnecessary rules, human error, and cosmic screw-ups, I’ve always hated the word “patient”. Maybe I can call myself “patient-lite” or “survivor-ish”. Nah.

On Patience and Waiting

One more lesson regarding patience. I’ve heard war described as a lot of waiting around punctuated by moments of terror. That observation describes cancer as well. We do so much waiting on our way to and inside of Cancer Land. We begin with the hardest part, the stage of uncertainty, while we wait for our first biopsy, our first scan, our first post-surgery pathology report, our first post-surgery molecular and genomic reports, our first chemotherapy treatment, our first chemo side-effects. We wait for the most acute of the chemo side-effects to ebb while we wait to go back to the cancer center and once again wait at the lab for the blood draw, wait for the lab results, wait to see the assistant who takes vital signs, wait to talk to the doctor or nurse practitioner, wait for the chemical cocktail to be prepared, wait for the infusion to finish, and wait for more side-effects to kick in. We wait for referrals to nutritionists, physical therapy and other specialists, and we wait for insurance companies to approve treatments. We have worries and questions, so we write to our doctors on Patient Gateway or MyChart and wait for a response. The response often elicits another question, and we wait again for an answer. We finish one line of treatment and begin a stage of maintenance and what is called “surveillance,” waiting to finally feel better – “like ourselves” (which rarely happens.) In the meantime, we wait for appointments for periodic scans and blood tests, we wait for results, and we wait for the doctor to explain the results.

And all the time we wait for the next shoe to drop: To find out that the cancer has metastasized or the tumor has grown. We wait for a consultation with another specialist, and we wait to see if the next course of treatment is effective. We wait for new discoveries, for the game changing revolutionary cancer treatments we read or hear about. (Just for a bit of context, the advances in treating my type of cancer tend to be incremental – a new drug or a new drug combination adding on average three or so months until the cancer reoccurs.) In the meantime we fight feelings of impatience because we know we should make every moment count. And that is a lot to demand of our uncomfortable bodies and anxious minds.

Acknowledgments

Thank you, Debra Cash, for taking some of the load off my body and mind by helping me craft this post. And thank you to my husband and kids for trying their best to to make my birthday celebratory. I apologize for my failure to cooperate.